The Impact of Health and Social Services on the Quality of Life in Families of Adults with Autism Spectrum Disorder (ASD): A Focus Group Study.

BACKGROUND: Autism spectrum disorder (ASD) is a complex developmental condition that affects the whole family. The gap between childrens' needs and their satisfaction, especially regarding what concerns the presence of social and healthcare services, is still a source of burden, particularly after the transition to adulthood. Our study aimed to gather a comprehensive view on how parents of adults with ASD perceive (and interact with) health and social services, and how the provision of care impacts family quality of life with the aim to advise ASD intervention programs. The goal is to identify specific areas of change useful to influence autism intervention strategies so that they more effectively meet the needs of young people with autism and their families. METHODS: We conducted two focus groups with parents of young adults with ASD. A semi-structured focus group methodology was adopted. The QoL conceptual framework guided data collection and analysis as part of a directed theory-driven content analysis approach. RESULTS: The lack of structured care pathways and the low level of integration of different services were the main limits reported by parents during the focus group, while a shared positive perception of the experience conducted together as caring families emerged. CONCLUSIONS: The experience here reported claims for a greater role of the institutions in order to facilitate the building of networks that are really inclusive for persons with autism in society and to support the implementation of innovative solutions for the welfare system. Furthermore, parents stressed the need for the provision of support to the family.

Life-long individual planning in children with developmental disability: the active role of parents in the Italian experience.

Many young adults with neurodevelopmental disorders experience poor transition outcomes in key areas, including employment, health care, and independent living. Innovative welfare models highlight the importance of involving the local community, and in particular the parents, as important stakeholders capable to generate services and affect local economy. As indicated by the World Health Organization, the availability of person-centered responses, also providing a health budget, appears to be the basis for taking into account person's rights to self-determination. Health services and local stakeholders could play an important role to facilitate the implementation of support networks that are functional for an effective social inclusion. In order to improve current practices in transitioning to adulthood, it is of paramount importance to collect and learn from the living experience of people with neurodevelopmental disabilities and their families.

Individual planning starts at school. Tools and practices promoting autonomy and supporting transition to work for adolescents with autism spectrum disorder.

There is an increasing need for effective services and strategies to favor the transition from school to post-school/working experience for individuals with disabilities and specifically with autism spectrum disorder (ASD). Post-school options are still limited, and most adults with ASD struggle in finding adequate and stable job opportunities. This work analyzes the increasing number of laws issued in Italy in the last decades in order to improve social and working inclusion. The central role of the individual educational planning (IEP) as part of the broader individual project is discussed. Also the potential of pathways for transversal skills and orientation for future employment outcomes is taken into consideration. Good practices promoting autonomy and supporting transition to work starting from school years are reviewed. The international literature shows different models and tools, which could be applied to the Italian school. The COMPASS consultancy model could favor the achievement of individualized transition IEP goals. Peer mediated intervention could improve social skills, a core weakness in ASD, though a central element for success in the workplace. Another key element is the parental involvement in the construction of the future of their children with ASD.

Executive functioning, adaptive skills, emotional and behavioral profile: A comparison between autism spectrum disorder and phenylketonuria.

INTRODUCTION: Influential theories maintain that some of Autism Spectrum Disorder (ASD) core symptoms may arise from deficits in executive functions (EF). EF deficits are also considered a neuropsychological marker of early treated individuals with phenylketonuria (PKU). Aims of this study were: to verify the occurrence and patterns of specific EF impairments in both clinical groups; to explore the coexistence of EF alterations with adaptive, behavioral and emotional problems in each clinical condition. MATERIAL AND METHODS: We assessed EF, adaptive, behavioral and emotional profile in 21 participants with ASD, 15 early treated PKU individuals, comparable for age and IQ, and 14 controls, comparable for age to the clinical groups (age range: 7-14 years). RESULTS: ASD and PKU participants presented two different, but partially overlapping patterns of EF impairment. While ASD participants showed a specific deficit in cognitive flexibility only, PKU individuals showed a more extensive impairment in EF with a weaker performance in two core EF domains (inhibition, cognitive flexibility) as compared to healthy controls. Psychological and adaptive profile was typical in PKU participants, while ASD participants experienced behavioral (externalizing symptoms), emotional (internalizing symptoms) and adaptive disorders (general, practical, social domains). CONCLUSIONS: Present results support the view of a relative disengagement of adaptive and emotional-behavioral profile with respect to EF skills and suggest that other dysfunctions contribute to the multidimensional phenotype of ASD participants.

Executive Functions and Symptom Severity in an Italian Sample of Intellectually Able Preschoolers with Autism Spectrum Disorder.

A novel battery (BAFE; Valeri et al. 2015) was used in order to assess three executive function (EF) abilities (working memory, inhibition and shifting) in a sample of 27 intellectually able preschoolers with autism spectrum disorder (ASD) compared with 27 typically developing children matched on age and nonverbal IQ. Differences in EF skills were analyzed in participants with distinct ASD symptom severity. Children with ASD performed worse than typical controls on both set-shifting and inhibition, but not on visuo-spatial working memory. Additionally, children with more severe ASD symptoms showed a worse performance on inhibition than children with milder symptoms. These results confirm the presence of EF deficits and highlight a link between ASD symptoms and EF impairments in preschool age.